“People who have fought cancer and won may expect to go back to their ordinary lives. But life after cancer can be anything but ordinary.”
So writes John Casey for WebMD. If you’re a cancer survivor, you probably know exactly what he’s talking about. Surviving cancer was your main goal for months, maybe years. Now, maybe it’s in remission, or the doctor has given you a clean bill of health. Suddenly that battle you were using all your resources to fight is gone from your life. And strangely enough, you feel the gap.
“Once you finish treatment, says Susan Nessim, author of Can Survive: Reclaiming Your Life After Cancer, “people start moving away from you because they assume you’re fine now. But it’s not that easy. Many of us are not prepared for the fact that everything isn’t going to be the same.”
Enter a new book by authors Sherri Magee and Kathy Scalzo: Picking Up the Pieces: Moving Forward After Surviving Cancer. Since cancer survivors don’t get guidelines for how to navigate life after treatment, this book answers a lot of questions, like “Why do I feel confused?”, “I’m out of sync with my friends-how come?”, and “What if it comes back?” It presents four phases of the process of getting back into life, and relays the experiences of real cancer survivors with practical advice.
“This book is about the period after cancer diagnosis and treatment,” writes Anita M. Unruh for The Canadian Journal of Occupational Therapy, “described by survivors as ‘an in-between place, limbo, a weird nothingness, a neutral zone,’ or ‘the Void’ as the authors named it. It is about navigating the confusing and often contradictory emotions and thoughts experienced following the intense struggle for survival that characterizes treatment.”
“Coping with a cancer diagnosis and treatment is no doubt difficult,” says the BC Cancer Agency, “but the aftermath of surviving the disease often comes with a new set of challenges. As Michael Kleisinger, a 29-year-old cancer survivor, puts matter-of-factly, ‘My life cannot go back to the way it was. My outlook on life has changed. Even after finishing treatment, your battle with cancer becomes a daily challenge.’”
Dr. Sherri Magee, co-author of the book, is an independent oncology researcher who has designed cancer-recovery programs for more than 15 years. “[Cancer survivors] are exhausted, overwhelmed with fears of recurrence, struggling to manage the side effects of treatment, and trying to make sense of the experience,” she says.
Kathy Scalzo, the other co-author, has designed and implemented change initiatives for over 200 healthcare organizations, and spent four years studying hundreds of cancer survivors. “Cancer shatters a lot of illusions,” she says. “The illusion of health, the illusion of having control over their lives. Survivors live with a roller coaster of emotions because right next to the intense gratitude for life sits fear and anxiety, even depression because you are not who you were.”
Both authors point to faith and spiritual practices as “incredible coping mechanisms” for getting through this difficult period. If you’re experiencing any of these emotions, get your copy today!
If you’re looking for answers after cancer treatment, please check out Kathy and Sherri’s book at their Amazon page.
My breast cancer journey began in Feb 2009 with stage 3, ER+, HER2+ 5cm tumor + positive lymph nodes. My systemic treatments included 6 months of neoadjuvent chemo/including a clinical trial phase, mastectomy, 6 weeks of radiation,Herceptin IV,which caused a severe, near cardiac arrest on the first round, several months under a cardiologist’s care, then resuming Herception with pre-meds for the reaction. Reconstruction resulted in an infected implant, which forced the dr to remove it. Additional reconstruction: Tram flap surgery. Nipple/ clinical trial which failed, still waiting on what to do about the nipple. All through the journey, I was so strong, gave motivational speeches, became known as The Joywarrior.
I worked through most treatment as much as possible, in the field of elementary ed. 2012 is the first treatment free/ surgery free year since 09. AND, YES, I HAVE CHANGED! AND YES, EVERYONE THINKS I AM MORE CAPABLE THAN I ACTUALLY AM. THIS makes me feel deeply insecure at times, in a field I have devoted my life to, in fact, was a workaholic before BC. Definitely going to read the book. Want to connect with others in the same position.
LONELY PLACE TO BE!!! Kathy ” Joywarrior” At least, I want to remain a joywarrior.. Have started a blog to try to piece it all together…
Hi, Kathy. Oh my goodness, have you been through it! I can’t imagine the challenges you have faced. Yes, please, give yourself permission to be weak and to fall apart once in awhile. You certainly deserve it. I’m all for staying positive and being as strong as you can, but you also have to give yourself the time and space to work through the emotions that come up when you’re going through multiple disappointments and difficulties. Surviving cancer can feel very lonely—I experienced that after I went into remission. Everyone expected me to be “normal,” and I felt so different. You are definitely not alone in that.
As to people thinking you are more capable than you are—well, after hearing your story and how you have come through it, I imagine you ARE quite capable! But I know what you’re saying. You shouldn’t “always” have to appear strong. I hope you have friends that allow you to just be your little old human self sometimes. If you do read the book, please let me know what you think, and here’s to becoming the person you are now, and finding a new strength within you. Lots of light and love.
Thank you for higlighing this Britta. I passionately believe that more follow-up care is needed to give recognition to the post-treatment phase of cancer survivorship. Sometimes there can be a code of silence surrounding the aftermath of cancer treatment. We can experience feelings of fatigue, guilt, loneliness or depression, alongside feelings of gratitude and a renewed sense of purpose. As we transition from the treatment phase of survivorship, we are not always prepared for the maelstrom of mixed emotions which can hit us. On my Journeying Beyond Breast Cancer blog, I provide a space for survivors to share their experiences. Following my own diagnosis, I underwent nine months of treatment – surgery, chemotherapy, radiotherapy and brachytherapy. I felt as if I had a new full-time job on my hands, a project which took up all my time. It was structured around appointments and moved through defined stages to a clear end goal. While I found the treatment grueling at times, I had my family and medical team behind me. It was only when treatment ended and that structure fell apart, that the full impact of what had happened hit me. I felt cut adrift. There is an expectation that when you walk out of hospital on that final day of treatment, your cancer story has ended, but the reality is that in many ways you story is only just beginning. Now the real work of healing begins.
Marie, Yes, indeed, the healing begins after the shock of completing treatments and we must continue to have our team of support around us to help us cope with the side effects on our bodies, minds and emotions. I appreciate you sharing with us and your blog has been so very helpful to myself and so many! Thank you for all that you do – Britta
I am a single mom and have finished all my treatments but now have to resume a “normal” life. Being a single mom is tough as is but going through cancer, chemo and the worries bout if it returns or not – little own worrying about your child. I don’t get to concentrate on myself as I have a child to raise and now must find a daycare before I return back to work and just get back to my regular routine before I got sick. I am tired and somedays I find it difficult to be a single mom – to play, or go outside or even buy groceries but gotta pull through. I must go to work to provide for my daughter but if it is my choice I would not go back to work cause I don’t have enough energy now to be mom little own a working mom. I have finished my treatments July of 2009 and been in remission for 6 months and I am 41.
Vel, I totally feel for you. I know that it must be difficult to be a single mom, taking care of a child and getting the care you need for yourself as well. Congratulations on your survivorship. You are such a fighter and an inspiration. While I’m not sure how to help you relieve all of your stresses, there are a few things that you may be able to do to cut down on time and responsibilities. Instead of heading to the grocery store check out http://www.FreshDirect.com to do all of your shopping online (they also offer organic produce) and will deliver it directly to your door without you having to spend time in the store. You can also get support from the http://www.singlemothers.org/ network which offers lots of information and support groups. What has always helped me is prayer, the power of it has brought a lot of relief and much comfort. I hope that this helps. Love and light – Britta